Our flight Sunday was super early, but we made it to the airport and I had a great conversation with the Uber driver a fellow math educator. Our time in the sky went by in the blink of an eye, as Ryland. Felicity and I took big naps on the plane. We were lucky to have a whole row to ourselves at the back of the plane and a travel blanket to get snuggly with (Thanks Summer!). When we got back to WI, we were able to meet our dear friend Lisa for dinner and Ryland had a HUGE craving for Solea’s bean dip. We enjoyed having this time and dinner together, so glad it worked out.

We got to have a conversation today with Dr. Rumler (our home neuro-oncologist) about many of the options in front of us. She talked with us about what matters most right now which feels like a loaded question. One of our priorities this time home together, but also getting to have the summer together would be great. We discussed getting the care described below closer to home at St. Vincent Children’s Hospital in Green Bay which is about a 25 minute commute.

We had a nice evening together including a run to the post office and grocery store. Ryland’s steroids and other new medications are working well to manage nausea and we only have to get him dosed twice a day. When he woke up this morning he said “What’s for lunch?” And when he woke up from nap his first words were “What’s for dinner?” Ryland managed to beat me in a Pokémon TCG Battle and we had a bit of family movie night together watching Zootopia and Trolls World Tour. Many snuggles, smiles and cookies were enjoyed together.

We had already come to terms with the fact that DIPG/DMG is nearly universally terminal. We had really hoped that our clinical trial would give us some period of stability. One of the issues that trials run into is lack of funding. Almost all funding is provided by different funds raised by bereaved families and organizations dedicated to their child’s legacy and someday finding a cure for this awful disease. This seems like an area where we have a market failure. Today I heard about the sonALAsense trial is in danger of being discontinued due to funding issues. While just a handful of kids are able to do a phase 1 clinical trial in a year (12 or 1 a month) the thought that something that seems to be working well for families being taken away from them is truly heart breaking. If you would like to make a donation towards keeping barrier breaking therapies running you can do so at this site.  https://ddrfa.org/